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Thursday, November 30, 2017

I have been in a ton of pain today, in an on-and-off pattern, and it is just finally catching up to me. As I am writing this, I feel like someone has twisted the middle joints of my fingers all around and they ache terribly. My ankles feel tender inside my shoes. My wrists feel like they are bruised inside the bone. "I want to cry," I have told several people, in a joking tone but in complete seriousness. I do not know if I was hoping that someone would see through it or that no one would.

I have had to catch my breath a few times when the pain has washed over me in almost unbearable waves. I have spent the day scolding myself for not starting back on my Arava sooner, and for not calling the specialty pharmacy that arranges my Humira. I have given a presentation with half of my mind focused on the words coming out of my mouth and the other half focused on my painful, painful, painful body.

There is something so simple yet so upsetting about physical pain. I have been living with it for so long that on days where it seems to win out I feel like I am letting everyone down, myself included. I have actively stopped myself from mentioning a hurting joint in conversations with friends. I do not want to bore people, and I do not want to complain. Elaine Scarry, who studies pain, writes, "to have great pain is to have certainty; to hear that another person has pain is to have doubt." I fear not being believed. I fear people thinking I am exaggerating pain. I know they do, because I am human too, and sometimes I catch myself doubting other patients, and then I repeat Scarry's quote in my mind and try to think and act more empathically. Sometimes, pain makes me feel like I am living in a different reality, one that is a few degrees removed from where my friends are.

I have also been missing Tulane, New Orleans, and all of my friends there terribly over the past week or so. I cannot explain it. I wake up and a different NOLA friend comes to mind each morning, and I wonder what they are doing and want to invite them to Bruff and to walks in Audubon Park to hear about their lives. It seems that I do not belong in New Orleans or in Chapel Hill. I exist in this tragically peculiar middle space in which I am certainly not caught up with friends at home, yet I have definitively moved away from New Orleans for at least the next two and a half years. I do not seem to understand what is going on in either place. Old friends in Chapel Hill throw around terms I do not know and mention events that I am unfamiliar with and reminisce about their freshman year experiences together and continue old traditions. They have done so many incredible things during their three semesters of college and are such accomplished students, and I cannot help but feel like all I have done is been sick. I want to try to catch up on all they have experienced, but I do not want to intrude on anything sacred, and it is almost impossible to try to figure out when I can ask questions and when I should just let everything be.

Perhaps sacredness is at the root of all of this. Whenever I try to explain New Orleans or my friends there to my Chapel Hill friends, I get this pang of guilt that what I am doing is wrong, and so I give abbreviated and sugarcoated versions of events between long pauses that allow me time to decide how to speak in a way that does not drive that pang of guilt further in. There are some stories I just don't tell. Some of them are sad and some of them are hilarious and most of them involve combinations of emotions that you would never think could go together, but it feels wrong to disclose these moments to people who weren't there, because they feel so sacred. They were all moments that took place in one of the most frightening years of my life, and with people who could never be replicated by my inadequate descriptions of them.

Obviously, I also want to avoid being the girl who goes around and tells everyone where she would rather be. None of us can stand that girl, myself included. I do not want my friends here to think that they pale in comparison to my friends in New Orleans, because that would be completely untrue. Sometimes I just want to ask them, "What if you had to leave everything behind? What if you were at a completely new school right now after loving your first year at UNC? What if you had to give up every single friend you made freshman year?" But hypothesizing about how one might feel is not the same as feeling it, and so these questions lack power.

I wish I could tell the universe that being sick for my first three semesters of college so far has taught me many lessons and introduced me to phenomenal people, and that pending approval of this revelation the universe would grant me a chance to start college over without a body that is constantly betraying me. But this is not the way of the world. So I am going to keep being startled and suffocated and saddened by the pain I experience so frequently, and I am going to keep missing my friends in New Orleans, and despite all of these difficult circumstances I am going to keep going and keep trying new things and keep trying to strengthen old friendships and keep trying to be healthy. It is the least and most I can do.

Saturday, November 18, 2017

I've had a hard week. Actually, I've had a hard semester. Every time I see a new doctor or explain my situation to a new friend they express utter disbelief that I am still in school. I'm THAT girl.

I have been running nightly fevers this week, which has been less than ideal but bearable when I am intentional about time management and getting all my work done prior to my inevitable rise in body temperature. Its predictability adds to the frustration, but I am trying to take everything slow and take deep breaths. On Thursday I made a visit to the Student Health Center because I was feeling terribly ill and missed both of my morning classes (very atypical of me), and the doctor I saw essentially insisted that I "listen to my body" by spending the day in bed. If I have to rest and cancel all of my plans today, I'm doing it with pets, I thought, and so my dad kindly picked me up and drove me home, where I slept for many of the daytime hours with my small dog curled up with me.

As many of you know, I saw another new rheumatologist this past Monday. I am happy to report that the experience was excellent. After taking my history (which we both admitted was quite extensive) and performing a clinical exam, she looked me in the eyes and said, "I believe you.I don't know what's going on, but I believe you." I am so grateful that she said this. For the entirety of the #MysteryIllnessCrisisOfFall2017, not a single soul had said this to me, neither a doctor nor a friend. I did not realize how much I was longing to hear it until the words came out of her mouth, and for the first time in several months I felt like I could breathe. Intentionality is everything. This is likely to be a good patient-doctor match.

The new rheumatologist and I laughed about what a mess I am together before talking through several different options for next steps. I requested a referral to physical therapy, where they will be helping me with inflammatory hip issues that have been bothering me over the past few months. We are starting me back on my Arava (leflunomide) and a biologic that I have not yet tried, Humira. If any of my arthritis/autoimmune friends have been on Humira and would be willing to share tips, it would be much appreciated! I hear it is excruciatingly painful but effective for many people. I will be doing the at-home syringe injections every two weeks.

Between the fevers, the death of my dog, other painful symptoms, outside scenarios, and an overwhelming amount of academic assignments, I am low-key having a terrible two weeks even in the midst of the semester that is trying to destroy me, so if I have not responded to your email, message, or text, please know that I received it and that all of them have been so encouraging to me. Thank you for your kindness. I read every single message multiple times and cherish each one of them.

My friend Alana has put up with my struggle so compassionately this week, so I would like to thank her for cheering me up, listening to my complaints without any trace of judgement, and making me laugh during my nighttime fevers while we "did homework" (read: hung out in the student center with our assignments open on our laptops). I am thankful for sweet friends with lots of love to offer and smiles to share.

Even though I have been living with chronic pain for about seven years now, I still sometimes feel absolutely suffocated by the notion of never breaking free from the body that entangles me in the cruel stabs of invisible knives and silent agony of unrelenting aches. I am thankful for friends who make space for these worries of mine, and who acknowledge that they do not always dissipate with time, but rather fade in and out.

In one of my classes this semester we have been talking about illness narratives, and about listening to people's own account of their health experiences. It has allowed me the opportunity to ask some people, "What is it like to live with [condition]?" In asking this question, I have been forced to confront the reality of how infrequently we take the time to fully soak in someone else's narrative rather than constructing our own. We are quick to notice the little things, like our friends having to call their doctors or getting injections or going to the hospital often, but we rarely step back and ask about the big picture. I would encourage you to ask someone that this week, if it feels appropriate and if it is a question you think your friend would be comfortable answering. You might be surprised by the response you receive or what you learn.

I would like to thank my friends Marissa, Marisa, Laura, Annie, and Erica for helping me remain in my classes this semester by sharing their notes with me when I am absent from class and keeping me caught up on the material. This is a story for another post, but I almost withdrew from the semester due to my health. These fabulous friends encouraged me, supported me, and assisted me academically, even though I just met all of them this year. I am lucky to know such wonderful people.

This semester will be over very soon, which is a good thing because I frankly don't know how much longer I could make it through. My dad and I are visiting New Orleans in between my last exam and my surgery, and I am SO excited!!!! I cannot wait to see all of my Tulane friends and visit St. Anna's, my NOLA church. I just have to make it a few more weeks, so if you have any excess strength or energy please send it my way and I promise to use it wisely.

Monday, November 13, 2017

Thank you all for your sweet messages, emails, hugs, and phone calls over the past week. I am feeling much better physically than I was a few weeks ago, but am still having some strange symptoms and am still undiagnosed. The #MysteryIllnessCrisisOfFall2017 drags on.

Bella & me last Monday

My sweet German Shepherd, Bella, passed away on Wednesday. She was surrounded by love and the people she adores the most. My mom and I held her as she took her last breath. We have had Bella since I was in the first grade, so I cannot even remember a time without her. She has been with me for the entirety of my education, and on the hundreds of sick days I have had she has come over to me on the couch, rested her head in my lap, and looked up at me with striking brown eyes. Bella had severe arthritis, and I often felt as though she was the only one who fully understood the pain. Sometimes we would walk up the stairs together slowly, taking them one at a time, and then when we would get to the top we would look at each other and celebrate our win. She was fiercely loyal and amazingly gentle. There is no other dog like her. My family misses her terribly.

This afternoon I am seeing a new rheumatologist for the first time, and to be honest I have lost some hope and am not expecting much from the appointment. I am so exhausted. I am scared of whatever happened to me so acutely over the past several weeks flaring up again, especially since I am no longer on any medications for my arthritis except for an NSAID. I am trying very hard not to give up. My only other upcoming appointments are with cardiology at the end of November, surgery in December, and ophthalmology and my old rheumatologist in January. I am feeling glad to have less appointments, but also frustrated because we really haven't gotten anywhere at all aside from ruling things out.

I am super annoyed about how this semester has gone, because I really wanted it to be good and healthy and fun. I feel like my friends and professors are not seeing my best self, and I am not seeing my best self, and it is so irritating to have no control over my body and no diagnosis or treatment in place. Being sick in college, and in my late teens, when everyone else seems to be experiencing their peak of health, is immensely lonely. Sometimes when I am hanging out with "healthy" friends I find myself distracted with jealousy of the lack of thought they put into their health. They get up without feeling a pang of panic about how their ankles, knees, and hips will cooperate with their new position. They bite into their food without thinking about the pain it will cause in their jaw. It is hard for me to imagine not feeling constant physical pain.

I think there is a world somewhere out there where Bella is running around on joints free from any pain, chasing tennis balls and befriending swans and cuddling with her toys. I think we all get to enter that world at some point. Sometimes I wonder if people think I am religious just because I am sick; are my beliefs just a coping mechanism? I don't think so. I think I genuinely believe all these things about a better place. But I also think that if you believe them just because you are hurting, that's okay too.We should all be a little gentler with each other.

Meet the Author

Rachel Sauls

Welcome! I'm Rachel, a 19-year-old college junior from North Carolina. I blog about juvenile rheumatoid arthritis, life, and all of the intersections between the two. I'm so excited that you're here and I can't wait to get to know you!